"Serology doesnt allow diagnosis"
Frustrated beyond measure!
I have been trying to get a diagnosis for maybe 15 years. Off an on positive inflammatory markers. I finally sat down and listed out everything for my GP. I had a Rheumatology appointment a couple of months ago but she seemed pretty dismissive, saying that my lab work didnt show enough abnormal serology for an AI dx. My GP has referred to neuro, endocrinologist, and for a second opinion Rheumatologist. She thinks there is likely a connective tissue component along with probable POTS and hEDS. Pretty certain of Hashimoto's as well. Following is what I took to my appt. today. Literally every symptoms I could think of. I did have a nasty virus in December which really made the joint issues flare and I have not returned to baseline (for me)
I do have significant OA in c-spine, l-spine, hands, feet, and hips, which they are saying is causing all of the pain. When I tell them that the joint inflammation really started in December they tell me it must have snuck up on me (they=the Rheumatologist)
Lab Results
• TPO antibody: 135
• ANA: Positive
• Anti-RNP: Rising titers — 1.5 to >8 over a 2 months period
• TSH: Fluctuating, reached 11 over past 2 years; last checked November 2025
Current Symptoms
Musculoskeletal
• Widespread joint pain — hands, feet, hips, low back, cervical spine
• Lateral hip and groin pain — greater trochanteric area and true hip joint
• Morning hand and foot stiffness, pain, and swelling that gets better but doesn't go away throughout the day
• significant painful trigger finger in the morning subsiding to mild throughout the day, painful
• Neck pain and stiffness
• Generalized extremity joint and spine stiffness, pain
• Knee pain (no arthritis on imaging)
• Right shoulder rotator cuff issues, with one detached deltoid tendon
Neurological
Burning sensation feet and toes — worse at night at rest
Intermittent positional arm numbness radiating into fingers, worse lying down
Balance problems — longstanding
Bladder hyposensitivity — reduced urge sensation
Vascular / Autonomic
Cold intolerance — constantly cold
Pain in hands and feet during rewarming after cold exposure
BP typically 90/60 to 110/70; drops to 80s/50s post-procedure
BP variability with episodic tachycardia
Orthostatic lightheadedness
Dyspnea without exertion, racing heart
Palpitations/PVCs
General
• Dry itchy eyes
• Dry itchy ears
• Reflux / GERD
• Intermittent unexplained nausea
• Decreased libido — approximately 2 years
• Weight gain 10 lbs over 2 months
• Brittle nails, absent/reduced lunulae
• Dry itchy skin
• Dry cuticles which I compulsively pick at
• Anxiety and palpitations
• Tension and seasonal sinus headaches
Symptom Pattern
Historically episodic/cyclical symptoms
Viral illness early December 2025 triggered sustained flare
Constant symptoms since December 2025 — not returned to baseline in 5+ months
History
Hip and leg pain from childhood
Extreme periods, hysterectomy showed adenomyosis
Joint hypermobility in youth — voluntary dislocation of shoulder and hip
Finger hyperextension beyond normal range
Chronic ankle instability
Balance problems — longstanding
Joints now stiff and arthritic, no longer hypermobile